mom4cem

I'm the same as OLL. I feel every beat, fast or slow. So I feel 65 as slow and 80 as fast,,forget about once it hits the 90's I feel every single beat and faster,,really forget about it!!

I have the bandana. My daughter got two of them from playing in a soccer tournament. It is supposed to keep cool for about 2 days. I used it one day,,and it was nice to have the cool feeling around the neck. I'll have to look for the mister here...It is sooooo hot. Today is supposed to be 104-106 with humidity...Yikes!!!

Just wondering if I missed a post about it. I know it was discussed originally to be the 6th of this month I believe but have not read anything unless I missed it. I think it was a matter of finding a place. I sure hope we can still do/meet at some point.

Nice link and easy to understand.,thanks

I went to see a Doctor of Osteopath a short time back and started on a no/low sugar and no/low carb meal plan. It's tough but I have noticed a bit of a difference. It is just retraining your body to eat well again. I agree you can check out and see what you begin to notice affects your body. You would be surprised! Low glycemic foods are really what I am striving for,,things that do not impact the blood sugar to quickly. My D.O. says he feels outside of adrenal fatigue, low b/p etc., that I am hypoglycemic and especially in the a.m. that may explain the heart racing. I am too chicken to do the 5hr glucose test,,I don't think I could sit in the lab for 5 hours, and quite possibly endure these symptoms while they test for it. So we are just going on the basis that I fit the profile. I would have to ditto most everything that Dionna has said. Food combing also. Protein with fats/vegetables, carbs alone and fruit alone. All having to do with what is necessary in the stomach acid to break the food down and mixing the wrong things can cause the digestion to be slower, gas etc. Good luck! There are quite a few sites that talk about elimination diet and then the rotation diet to then see how you feel with certain foods.

Funny, I would never have thought about a connection, if there even was one, but I have noticed there is one scar that I have received from some minor skin surgery since this started with all these wild symptoms about 1 1/2 -2 years ago. I notice that it gets very purple looking at times, it does not stay all the time, but I notice it often. Yet I have an even longer scar on my knee also from skin surgery that I had done a few years prior, and it stays white. Very strange indeed.

I've not experienced reactions like that except to some medications but I wanted to wish my best for LindaJoy. I hope she gets some answers soon and something to combat whatever it is that is making her so miserable. Please give her my best.

Welcome Dave. Sorry you had to be here, but glad you found the site. A supportive wife/husband/family/significant other is so important, glad you have that.

Sorry to hear that especially in this heat. I hope you are feeling better after the fluids, and keep cool and stay put the rest of this weekend!

I agree with the ones above as well as the one written by Lynn Fredrickson RN. She was a co-founder with Dr. Watkins to found the Autonomic/Mitral Valve Prolapse Center of Alabama. Hers was one of the first books out there to help understand the syndrome. It is a good basic start. The others are good also. They have stories from other patients, you can relate to so many of them. There is also one written by another RN who was part of a MVP/Dysautonomia program that they used to have running in Ohio in one of the hospitals in Cincinnati. I have read them all and found just reading others stories has helped give me hope that you can get back to a place of living as normal as possible with what you have.

How very fortunate that you found someone knowledgable and caring in your area. So glad to hear you are feeling better too. I hope it continues

I've had some discrepancies also. Not as wide as yours. I think that is pretty common. How do you take your b/p? Sitting with feet flat on the floor and arm level to heart, or lying down? I just never know which way to take it for the most accurate. I usually can't take it standing,,the machine reports an error.

Congrats on the new move, and glad it all went well. I bet I will be reading about Berlin, MD in one of the magazines on Best Places to Live, soon. I long for that small town feeling again. I grew up in a small town in Queens, New York,,and back then there was only two roads that went in or out of town.. We were the last to get shoveled out during storms, everyone knew everyone(though that could be tough when you were hanging out as a kid/teenager) and you could walk "uptown" to the stores etc. Now everything is big stores, need a car to get to the shopping centers or supermarkets etc. I always wanted to give my kids the hometown feeling. Maybe someday still. Enjoy it!!!!

About the beta blocker. Did you notice your heartrate? Was it fast or at a nice steady pace? I ask this because I know there are still many days when I feel wired, but tired, even on the beta and I can feel like this and my heartrate is fine. The beta can help to lower the rate and sometimes it helps people with anxiety, but I am guessing because it specifically slows the heartrate from the anxiety one is feeling but it does not acutally stop or cure the anxiety? Make any sense? You can still be having adrenaline surges/dysautonomia surges whatever, even though the beta may be doing it's job. Many times I feel like my heart wants to race, but the beta keeps it even, so I know the adrenaline is still pumping, that the nervous system is still out of whack. I probably said this before but I break mine up in the a.m. and p.m. But you are on the xl and I don't think you can do that with that particular one, but I could be wrong. Hope you get some sleep tonight and be good to yourself

I would say the same as Jacquie. What has your gyn tested you for? All the possible infections? You notice it all the time? Have you changed your diet recently?

Well that was a flipping waste of time!.. So sorry you were treated like that... I know that feeling. The only real aknowledgement I have ever received I had to drive over 10 hours to get to at the center in Alabama. That ain't no small drive to make so that is not done very often. Many doctors don't want to be educated on dysautonomia so forget about their PA's , there usually on the same level of thinking. From what I gather you have felt out the local doctors so you know who knows what or who does not know anything Unfortunately, much of the time we have to be assertive and research and get as much info as we can and try to self help as much as we can until we can find someone willing to listen and help. That was pretty stinky that the cardio did not even come in. I would make sure the next time I go see one, that I tell them in advance I want to be seen by the dr., not the nurse or the pa. Unfortunately, there was no way for you to know about being seen only by a pa ahead of time. I requested from my dr the catecholamine 24hr urine and plasma test. He did that without a problem. I saw an endocrinologist who was of not much help either. When I explained my situation and then saw my blood work results, she only checked for the usual thyroid levels/hormonal levels. Never suggested a 24hr urine or anything like that. It's so frustrating. Try the toprol xl, it just might help. Just because you don't have the 30bpm increase does not mean you don't have dysautonomia. P.S.,,,then I guess they better have an awards ceremony and tons of awards to give out. So many of us "actresses" out there, it's a wonder that Hollywood has not picked some of us up!

I've been atenelol for years. For the most part I don't notice side effects anymore. I get the burning eyes, but I am guessing that is weather related-especially with the humidity or allergies. To be fair, give it a bit longer and see how it goes. Laila,,I also have the morning tachy as soon as I open my eyes and am shaky etc. I take my beta blocker at that time, push some water and have to wait it out until it starts to kick in. Just getting up and moving sets it off even higher. For most of the day I am usually not to bad but the a.m. is the worst and it can last for about 3 hours for it all to settle, the jitters, my intestines to calm down(they overreact in the a.m. too!!) and my heartrate, the sweating..etc.

We all suffer in our way. Don't diminish your own suffering. How many would want to walk (or stand ) a mile in your shoes? Don't ever feel bad for letting it out. I hope you feel better soon.

A dr. I saw wanted me to do the 5 hr GTT, I chickened out. He said that if I started to experience symptoms at any point I could stop the test. Hanging around 5hrs at the lab is no fun, plus I would have to take my littlest guy. I also read the hypoglycemia is one of the many diagnosis they look at and/or exclude in the process.

Glad to hear you are back and resting. I hope this treatment does wonders for you. Take care of the pleurisy

HI, I don't see Dr. Grubb, never been there but I do recall from reading posts that those that do think very highly of Bev. I've read how knowledgable and understanding etc, that she is. Good luck.

((((hugs)))) I am so sorry you are feeling this way. I hope you are at least a bit better today. Families can go either way just like any relationship. A positive thing is that you were not afraid to stand up for someone/something. You let your Mom and the rest of the family know how you felt. I'm sure Mom knows after all these years on how to "get to you". It sounds easy to say to not let her get the best of you but that is what you must try to do. Put yourself first. This is your life now and while there are some things you cannot control, there is alot that you can. You laid out some feelings that you felt needed to be said about your nephew, out of genuine concern. Emotional upsets tend to make my heart race and make me feel yucky and no amount of meds seem to help. The only thing for me is riding it out. I hope you have done this part already and are better today. I like to say the old God grant me the serenity to accept the things I cannot change, to change the things I can and the wisdom to know the difference. It certainly is hard to do the first two and to the know the last!! I am glad you have such a supportive husband, that is also who I rely on the most. Thank goodness they understand. Be good to yourself/do something nice for yourself today!!!!

I guess I have two types. I have had panic attacks and some anxiety years b/4 being diagnosed with dysautonomia. Those I can usually ride out. I also get trembling, feel my stomach drop, sweat, and generally feel anxious, my heart races and I consider those adrenaline surges. They nowhere near feel like the panic attacks I used to experience. I wake up in the a.m. with my heart starting to race and feeling anxious etc.

Sorry about your visit to the ep. It sounds though that your family doc has not given up hope, and will keep working with you to find the right treatment. That is very hopeful. Hang in there

Rebecca, I have the same thing. The syndrome part is a type of dysautonomia. There are a few sites dedicated to MVPS, if you are interested in them let me know. Congrats., it is relief to know that what you are suffering from is real Hate to welcome another to the club, but glad you got some answers.